By wendy, on April 14th, 2013%
 FIBROMYALGIA (Photo credit: *SHESHELL*) Like your most annoying relative, the five “Ds” of fibromyalgia tend to show up over and over. No matter how positive you try to be, there are days when it really gets to you and you go tumbling back into that black hole that seems to eat all the good in your life.
Diagnosis – Depending on how long you’ve been sick, being diagnosed with fibro can either be a huge relief or throw you into a deep depression. If you’ve been hearing, “there’s nothing wrong with you;” for years, finding out that you actually AREN’T crazy is a major relief. On the other hand, once you realize that having a diagnosis doesn’t necessarily mean the doctors are going to be able to actually DO anything but try to manage your symptoms, you’re likely to fall into the rest of the “Ds.” Even worse, a fibromyalgia diagnosis frequently leads to even more diagnoses, since there are multiple co-occurring illnesses that go along with it.
Desperation – Desperation is a big issue for people with fibromyalgia, whether it’s a desperate search for treatments that work or a desperate struggle to pay the bills. No two fibro patients have exactly the same set of symptoms, and the treatments that work for one may not work for someone else. The worse your symptoms, the more likely it is that you either won’t be able to work at all, or that you’ll only be able to work part time, and both cause major financial issues.
Depression – Depression tends to be a frequent visitor in the lives of those with any chronic illness. You don’t only have to live with pain and other disabling symptoms, you get to hear your doctors telling you there’s nothing they can do for you, your friends and family telling you there’s nothing wrong with you, and society telling you you’re nothing but a lazy leech who would rather lay around and watch tv while everyone else works to support you. And people wonder why you get depressed?
Even if you have a job, the stress of trying to make ends meet on what little you can make can also lead to depression. If you can only work part-time, or can only FIND a part-time job, the situation is even worse. Do you buy medicine so you’re ABLE to work, or buy food? Do you pay the utilities this week, or hope they won’t turn them off before your next check so you can actually EAT this week?
Despair – The previous “Ds” have a bad tendency to lead to despair. You feel trapped, and can’t find any way out. It can be a horrible cycle, and it’s not easy to find a way to break it, especially when financial issues play a part. When rent and utilities take every penny you can scrape together, and you spend days or weeks hungry, despair can eat your world.
Defeat – Finally, there’s defeat; the last, and maybe worst, of the “Ds.” Defeat is a stopper, because once you feel defeated, you’re likely to give up. “What’s the point of fighting any more?” you think. It feels like no matter what you try, it goes wrong; no matter what you do, or don’t do, things just keep getting worse. It gets to the point that you feel like everything you do makes the situation worse, so why bother to do anything anymore?
I know how this feels. I know because I’ve been there, and I am there again. In the last 48 hours, I’ve eaten 6 pieces of bread, 3 with the last of the peanut butter, one with a little chicken salad made out of the last piece of meat in the house and homemade mayo made with the last of the cooking oil and the last egg, and two with a dab of butter. I’ve mostly been surviving on coffee with sugar, because once we eat the last 2 cups of pasta with alfredo and the cup of beans, there won’t be anything left but cornmeal mush with no fat or protein until we get paid on Thursday. I might be able to borrow a few dollars to get us through, but I don’t dare, because I don’t have ANY idea when (or even if) I’d ever be able to pay it back.
Why are things so bad, you ask? Because neither one of us can find another job, and the part-time jobs we have keep cutting our hours. My last check was $194, and I had to pay the last $200 of the rent with that and the $10 I managed to save from the last check. Last week I was scheduled a whole 12 hours, and hubby got about 15, so the next check MIGHT cover the $265 worth of utilities that have to be paid before they start turning things off.
We can’t even get second part-time jobs, because they won’t give us regular schedules, and without knowing in advance when you’ll be working, it’s impossible to co-ordinate two jobs.
I’m still fighting, still trying to find ways to survive, but it’s not easy to fight when you’re so hungry you’re weak and your brain doesn’t want to work properly. It’s even harder to want to survive when you see no way out of the trap you’re in . . . The worst thing about it is that I know that not only am I not the only one in this situation, there are thousands of people who are even worse off; with no place to live except the street.
I honestly don’t know what to do any more . . . We both keep applying for better jobs, but don’t even get an email back from most of the applications, and it’s really hard to get a phone call when you can’t keep the phone turned on half the time. I’ve got a few articles out trying to get them sold, but it could be months before anything comes of that; and I’m working on some that are already paid for, but that money is long gone. Hubby would have a FIT if he had any idea at all that I’m even talking about all this, but the payment for this website is gonna be due in a few days, and I don’t know if I’m going to be able to make it, so I wanted the people who follow this blog to at least have an idea of what happened if it goes away.
If you can, and want to keep the blog going, you can donate at the top of the page by using the PayPal donate button. At this point, I’m no longer too proud to beg, even if it DOES piss off my husband and decrease my chances of getting a better job. The idea of hitting the publish button on this post is TERRIFYING, but at this point, it’s the only chance I see.
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By wendy, on December 25th, 2012%
 A great resource for fibromyalgia patients; their friends, family, and caregivers. It’s that time of the year again. The holiday stresses are almost over (thank goodness) and we’ll all be back to managing and coping with our illnesses as best we can.
I’m not much of a holiday person, so I was doing my usual browsing about and checking social media when one of the people I follow on Twitter suggested this to me. I think it’s a great idea, so I thought I’d share it here as well.
For those of us with fibromyalgia, @FibroModem (if you’re on Twitter, you should follow her) has a new fibromyalgia blog directory available for download. It’s a work in progress, so check back for updates and additions. It’s always good to find a new blog that resonates with our own experience; and for new #spoonies it can be hard to locate useful information online. This directory makes it easier to get started, and for those of us who have been doing “this” for a while, its a good source of new blogs to follow.
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By wendy, on November 13th, 2012%
 Homemade Hand & Body Cream Now that we’ve moved, and I have my own kitchen again, I’ve been playing around with some of my homemade personal care products again . . . I’ve been wanting one of the “Little Dipper” crock pots for doing infused oils and such, and last week we had a full-size crock pot on sale that included one of the small ones for the same price as just the big one. Of course, I couldn’t resist, and this is the first project I’ve used the small one for. (You don’t have to have a “Little Dipper” to make this hand cream, it just makes the process a bit simpler.)
I’ve been wanting to make a new batch of hand cream for a while, because my hands had gotten so rough that they were snagging on the inside of my jacket pockets, but it was so much trouble to run back and forth hauling all the ingredients up to the main house that I kept putting it off. (I’ve been so much more productive since we’ve moved here that it’s just wild . . .)
I’m including an explanation of why I chose the particular ingredients I used after the recipe, including allergy information, so be sure to at least scan that to prevent wasting money and time making something you can’t use. (Important: before starting, please read Using Essential Oils Safely to be sure you don’t do anything that could cause harm to you or anyone else.)
NOTE: I’ve included links for all the ingredients (except the olive oil, which can be bought at any grocery store,) to make it easier for you to find them; as well as a link to the Little Dipper Crock Pot I used in case you want to buy one of those instead of using a water bath. For my Canadian readers, just switch to Amazon.ca for lower shipping costs. The links are affiliate links, and any purchases made through them will help to keep this site online, without costing you anything extra.
Rich, Creamy, and Healing Hand & Body Cream
Equipment needed:
- Little Dipper Crock Pot
 or a saucepan with a heat resistant glass mixing bowl that will fit inside it without touching the bottom
- A heat-resistant glass mixing bowl (if you’re using the Little Dipper)
- Either a meat thermometer or a candy thermometer
- A kitchen timer
- Measuring cups and spoons
- Something to stir with (a wooden spoon that can be reserved for non-food use is best, but you can use a stainless steel spoon as long as you don’t leave it sitting in the oils and you wash it thoroughly afterward. (Don’t use aluminum or plastic. Both of these materials can react with the oils and leach unwanted contaminants into your cream.)
- Potholders
- A clean glass jar to store the finished product
Directions:
 Chunks of shea butter melting
- Place the shea butter (or cocoa butter) in the “Little Dipper” crock pot and plug it in. (If you’re using the saucepan and glass bowl, put the shea butter in the bowl, and put enough water in the saucepan to come about half-way up the sides of the bowl when it’s suspended in the pot.)
 Almost melted
- Once the shea butter has mostly melted, start checking its temperature every few minutes until it reaches 165 degrees F. When it reaches 165, set your timer for 20 minutes. (This step is not necessary if you’re using cocoa butter. Shea butter contains little “crystals” that don’t fully dissolve unless it’s kept at 165 degrees or more for at least 20 minutes. If they aren’t completely dissolved, your cream will have a slightly “grainy” texture.)
 The coconut oil is in and melting
- Once the timer goes off, add your coconut oil, allow it to melt completely, and turn off the Little Dipper, or remove your bowl from the saucepan. (If you’re using the Little Dipper, at this point you’ll need to pour your melted mixture into a glass bowl. Use the potholders, the Little Dipper gets HOT!)
 The rest of the ingredients.
- Add the olive and jojoba oils, stir well, and set the bowl in the refrigerator for about 15 minutes to start the cooling process. You want to see a slight sheen on top when you take it out.
 All the ingredients are in, and it’s almost ready to go in the jar.
- At this point, mix in the rest of the ingredients and leave the bowl on the counter to finish cooling and setting up before putting it in your jar.
Before I started the recipe, I promised you an explanation of why I chose the particular ingredients I used for this cream. If you have any interest in creating your own recipes, or modifying an existing recipe, the explanations will help you learn how to decide on appropriate choices for your own personal needs.
Why I Made the Choices I Did:
The most important thing to keep in mind when you’re deciding which ingredients to use is your intended result. I wanted a rich cream that would moisturize extremely dry hands made rough by the constant hand washing my job requires. I also wanted something that would absorb quickly so that I wouldn’t need to worry about leaving smears of oil everywhere, dropping things because my hands were slippery, or staining my clothes, sheets, or furniture when I used the cream on other parts of my body.
Shea Butter: I picked this because I wanted the base to be a carrier that was solid at room temperature, and cocoa butter makes me itch. (If you have a latex allergy, you’ll want to substitute cocoa butter to prevent allergic reactions to your cream.) A solid carrier eliminates the need to add beeswax to solidify liquid oils; and results in a softer, creamier final product. It, like cocoa butter, is excellent for very dry or damaged skin; with the added bonus of being an excellent addition in psoriasis treatments (and I happen to have psoriasis.) It does absorb a bit more slowly than cocoa butter, but since cocoa butter isn’t an option for me . . .
Coconut Oil: I chose coconut oil as my next ingredient because it is solid to semi-solid at room temperature, but has a lower melting temperature than shea butter. (A spoonful of coconut oil held in the had will almost immediately liquefy, while shea butter has to be rubbed in to melt.) In addition; coconut oil is a wonderful choice for dry, itchy skin; and has anti-inflammatory properties (a bonus in controlling my fibromyalgia and arthritis pain, as well as the skin inflammation that comes with psoriasis.) It does feel oily to start with, but absorbs relatively quickly.
Olive Oil: This choice was made for several reasons as well. Olive oil is compatible with the skin’s natural oils, attracts moisture to the skin, and is another oil with anti-inflammatory properties. (Do you see a pattern here? I have problems with inflammation, so when I have a choice between oils with otherwise similar properties, I’m going to choose the one that is anti-inflammatory.)
Jojoba Oil: This is actually a liquid plant “wax” rather than an oil; and is extremely stable, helping to extend the shelf life of blends. In addition, its absorption rate and consistency are similar to those of our natural body oils; and it contains myristic acid, another anti-inflammatory compound.
Vitamin E Oil: Full of antioxidants, vitamin E oil helps to preserve the other oils and extends their shelf life. Known to be healing to the skin, it’s used in many over-the-counter skin products, including those intended to reduce scar formation.
The Essential Oils:
When choosing your essential oils, not only do you need to consider the properties of the oil; you need to think about their scents, and how they smell together. No matter how good your cream feels, or how well it works, if you think it stinks you aren’t going to want to put it on your body. In addition, some essential oils have a very distinct color, and will affect the color of your final product. (For example, the German chamomile I included is a rich royal blue color. With the tans, yellows, and pale greens of the base oils used, I ended up with a sort of pale willow color. If I’d included carrot oil as well (an orange/red oil), it most likely would have turned some shade of brown.)
Lavender Oil: This is one of my favorite essential oils to use, since I love the scent of high quality lavender oil (the cheaper versions tend to smell sort of medicinal.) Not only does it smell wonderful, it has many properties that are useful in skin care and in the treatment of my fibromyalgia symptoms. Lavender oil is relaxing; anti-depressant; anti-inflammatory; reduces pain, stress, and anxiety; and helps me fall asleep.
Rosemary Oil: This is another oil I use a lot, especially in combination with lavender oil. I enjoy the way they smell together, and the way they work in combination. (Rosemary and lavender is my absolute favorite combination to use for bath salts.) It relieves muscular and rheumatic pain, and has anti-spasmodic properties (Restless Leg Syndrome anyone? It’s not a cure, but it seems to ease the muscle spasms for me.) If you have high blood pressure, don’t use this one, since it can raise your blood pressure even higher; and don’t use it on its own near bedtime since it’s also a stimulant and can keep you awake if it isn’t balanced by a more sedative oil like lavender or chamomile.
German Chamomile Oil: Most people have heard of using chamomile tea to help them sleep, and the essential oil is also very relaxing. It has pain-relieving and anti-inflammatory properties, as well as helping to ease stress and anxiety.
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By wendy, on October 24th, 2012%
 MARTA Bus Stop (Photo credit: Wikipedia) We’ve been in the new apartment for almost 4 weeks now, and I’ve discovered something important. . . It’s time to move on, not just in our living arrangements, but at work, too.
I didn’t want to change stores because I really like most of the people I work with (and the others I can deal with,) but staying at this store is going to be totally unmanageable. To be at work by 4PM, I have to leave the apartment by 1PM to make the connection to the bus at the other end. Then I spend an hour and a half to 2 hours and 15 minutes getting home, depending on whether it’s a weeknight or a weekend (and if the bus on either end is early or late, I’m screwed because I miss my connection.) Basically, I’m getting paid for 5.5 hours, and spending 11 hours to get it, and it’s playing hell with my fibromyalgia (not to mention the effect on my blood sugar from not being able to eat when I should, or what I should.) I just can’t handle 4.5 to 5.5 hours a day on public transit, so something is gonna have to change, soon.
Working with a chronic pain condition is difficult enough without this . . .
If you also figure in the physical costs (increased pain levels and flaring, fatigue that makes it possible to fall asleep standing up leaning against a post, fibrofog from hell, and a diet heavily weighted toward peanut butter sandwiches;) add the extra financial costs (multiple added bus trips because I can no longer just grab groceries before I leave work, buying cigarettes because I don’t have the time or energy to make them, and buying convenience foods because I don’t have time to cook;) then add in the money I’m losing because I don’t have time to write (anywhere from $150 a month and up;) it’s actually costing me more than I’m making to continue working at that store.
Luckily, I work for a major chain, and there are 12 stores within an hour’s bus ride of the apartment, so hopefully I can transfer to one of them (SOON!) If I’m really lucky, I’ll manage to get into one of the 3 that are less than 30 minutes away, so cross your fingers. (Tomorrow’s project is contacting all of the stores and trying to set up a time I can talk to the deli manager if they aren’t there when I call.)
Other than that, I haven’t really found any major difficulties since we moved. (There’s a noisy dog upstairs, but I’m not here enough for it to be that big a deal for me right now.) I’m loving the apartment, and we’re gradually getting everything organized and arranged. There are still some boxes that haven’t been emptied, but they’re all either in the bedroom, or stuffed in a closet because the things in them aren’t used often enough for them to be emptied. I’m even finding all kinds of stuff I haven’t seen in years because it sat in boxes under the bed from the time we moved to the cottage until we moved here.
I will admit, I miss “the boys” and Soxkitty, but it’s not like I can’t go visit, message them on FB, or call or text them whenever; and the advantages of the apartment over the cottage are worth it (mostly.)
Even better, hubby’s doing much better now. He’s seeing a different doc for his ADD, and this one a) has ADD herself, and b) actually recommended vitamin D instead of an antidepressant. I’ve been giving him vitamin D for the last few weeks, but she recommended a higher dose than I was comfortable with giving him without a doctor’s advice, and it’s really making a difference.
He’s also finding some folks to hang out with, which helps even more since it gets him out of the house. He even traded a second guitar someone gave him for guitar lessons. I hear a lot of growling and grumbling during practice sessions when he’s not getting the result he wants, but he doesn’t give up, he just b*tchs and keeps going.
Things have improved so much that I’ve even come home to find the dishes done and the living room cleaned up, and he’s volunteered to take over keeping the bathroom clean if I’ll buy some bathroom cleaner instead of making him use my homemade stuff. I’m thinking it’s worth the trade-off of a few extra dollars and the small amount of added toxins, since cleaning the bathroom tends to put me in bed for hours of recovery. I’m gonna have to think about this one – I’m not sure how comfortable I am with the idea of using a commercial cleaner again.
All in all, the move has been a very positive thing for both of us, and once I get the commute under control, I think I’m going to be very happy with the changes . . .
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By wendy, on October 5th, 2012%
 Moving Truck (Photo credit: netmonkey) http://www.flickr.com/photos/netmonkey/2749646355/sizes/m/in/photostream/
Moving sucks, and it’s even harder when you have a chronic illness, but it’s finally done (although it’s going to be a while before everything is unpacked and put away.) It wasn’t nearly as bad as it could have been, considering the fibro and all the stuff that goes along with that.
Moving is actually why I’ve been “missing” for so long. Between the packing, the actual move, and waiting for the cable company to get my net hooked up; I’ve been gone for a while, but I think it’s going to end up being worth it . . .
I’m loving the apartment and having so much more space, but I think the best part is just being able to cook and take a bath any time I want . . . The cottage didn’t have a kitchen, and only had a half bath, so for cooking and bathing we had to go up to the main house, and sometimes that just wasn’t an option.
Hubby and I both work nights, so we’re up at weird times of the night, and since our roommates kept more “normal” hours, a lot of the time I’d want to cook or take a bath when they were asleep. Now if I want to take a bath or boil an egg after I get home from work, I can, and I don’t have to worry about waking anyone up while I do it.
Of course, there are disadvantages to moving out, too. For one thing, getting to work now involves at least an hour and a half to two hours on public transit, instead of a 15 minute walk. Between getting to the bus stop, then walking to the train and back out to the other bus, I actually walk further than I did from the cottage to work. (The walk from the bus stop to the apartment is almost as long as the entire walk from work to the cottage was . . .)
The biggest disadvantage, at least as far as I’m concerned, is having to deal with the utilities and all. All that stuff was in the roommate’s names, so all I had to do was hand over the rent, and they took care of the rest. Now I’m the one that has to make sure everything gets paid when it’s supposed to, and make the calls when something screws up.
Like everything else in life, it’s a trade-off. There are advantages and disadvantages, but overall, it’s mostly a positive experience, and I’ve learned a lot about managing a move without triggering a flare. I’ve learned that:
- Pacing is the key to minimizing the physical stress of a move. If you can afford it, hiring a moving company to come in and handle the move for you is ideal. They’ll even do all the packing, for an extra charge. (If you can only afford for them to load, move, and unload; it’s still more than worth the cost to avoid having to lift and carry all that stuff.)
- If you can’t afford to hire someone, recruit all the friends and family you can. Although more than two or three people can be hard to coordinate, it’s way better than having to spend the week after the move in bed recovering. Coordinating will be easier if you stay in the house and direct what goes out when; put one or two people in the truck to supervise where things get loaded; and everyone else packing, fetching, and carrying.
- Start packing early! As soon as you know you’re going to be moving, start packing things you don’t use very often. I started the packing process in May, even though I knew it would be months before we moved. Out of season clothes, holiday decorations, knick-knacks, books you don’t read regularly (like seasonal cookbooks,) etc. can all be packed months in advance.
- Packing is an ideal time to throw things away. You’re going to have to touch everything you own to get it packed; so if it’s broken, worn out, doesn’t fit, or isn’t used anymore, throw it away and save yourself the work of packing and unpacking it.
- Label everything! This is one that most of us slack on, because it’s a pain to do; but it makes a huge difference when you get in the new place. “Miscellaneous” is not a helpful label! Useful labels include the room the box belongs in, plus the general category of things inside (books, dishes, winter clothes, etc.) and any specific items you’re likely to want within the first week or so. For things like toothbrushes, towels, the bedding you’ll need to put the bed together, and other things you’ll need right away; add “Open First” to the other labeling on the box. I spent three days looking for my cookie sheets because they ended up in a box that only said miscellaneous on it, and were buried under a bunch of random bits and pieces.
- When writing the contents on your boxes, makes sure that you put it on at least two sides, not just on top. If the only place you put your label is on top, you’ll have to constantly rearrange stacks of boxes to find what you’re looking for, because you’ll only be able to read the label on the top box.
- Medications, hot packs, heating pads, and anything else that is used in treating your illness should all be packed together, no matter which room they belong in. These boxes should be labeled on all four sides, and the top. Mark them as “Open First;” keep them separate from the other stuff; and even if you’re hiring a moving company, make sure you have these boxes in your possession at all times.
- Pack the most important stuff last, and either load it separately, like in the car, or make sure it’s the last thing to go on the truck, and the first thing to come off.
- Set up a staging area for the stuff that has to be unpacked immediately. Whether it’s one corner of the living room, or a separate section in each room, you’ll want the stuff you’re going to need right away somewhere you can find it.
- If you’re renting a truck, choose at least one size larger than the rental company says you’ll need. We were living in one room, so I rented the size U-Haul said would handle a one-bedroom apartment in one trip, and we had to make two, plus there was still stuff that didn’t fit.
- Get at least twice as many boxes as you think you’ll need, and lots of packing tape. You can always throw away extras, but if you run out, you’re screwed. You won’t have the time or the energy to run out and get more right in the middle of loading and moving things.
- Allow plenty of time for all stages of the move. It always takes longer than you expect, even for healthy folks; and those of us with chronic illnesses have to allow plenty of time for rest breaks. Remember that no matter how well-planned and well-organized a move is, there are always going to be unexpected delays.
Bonus tip: If you have clothes that need to go to the dry cleaner, drop them off the day before the move, and pick them up the day after. It will keep you from having to pack them, and save a bit of space in the truck, too.
Finally, do some research. There are tons of helpful articles and checklists online with tips to streamline and simplify the process, and help you make sure you get all the stuff you need to take care of done. I’m including some articles below to help you get started.
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If you’ve found the content on this website helpful, and you can afford to, please consider making a contribution to help keep the content coming and the site online.
By wendy, on August 10th, 2012%
 My latest book review column is available! Understanding Women with AD/HD was a fascinating read, and I had a very specific reason for choosing it. I like browsing books on Amazon, because many of them allow you to preview the table of contents and some of the other stuff; and when I previewed this one I noticed a chapter on fibromyalgia included in the section on associated disorders.
Since I’ve struggled with fibromyalgia for the past 15 years or so, that really caught my attention, especially since the reading I’ve been doing on AD/HD makes me suspect that my bipolar diagnosis may not be accurate . . . My symptoms (and history) seem to fit much better with an AD/HD diagnosis, so I’ve been trying some of the strategies in the books to see if they help. (I figure whether or not I have it, if the strategies help me, it’s a good thing.)
So anyway, back to the connection between AD/HD and fibromyalgia. The chapter on fibro provides an excellent explanation of how stress and fibromyalgia are interconnected; including explanations of how the limbic system and the Hypothalamic-Pituitary-Adrenal (HPA) axis work, how they’re affected by stress, and how that ties into fibromyalgia (dysfunction of the HPA axis is suspected to play a large part in fibromyalgia.) Continue reading Fibromyalgia & ADD are Related?? — Really? »
By wendy, on May 30th, 2012%
 English: MLK Memorial, Washington, DC: Passing through the "Mountain of Despair" to the "Stone of Hope" (Photo credit: Wikipedia)
By Wendy Burnett
(This post was written for the June PFAM (Patients for a Moment) Blog Carnival, which is now live and being hosted on ChronicBabe.com)
“Life sucks, and then you die” – unknown
Normally, I don’t believe this, but lately I’ve been having a SERIOUS “life sucks” period. Things have been extremely difficult since I lost my job, insurance, and home in 2008; but we’ve been surviving, and there have been some pretty good things that have happened during the last 4 years so it wasn’t all bad.
Those of you who have been following this blog, and/or interact with me on Facebook, probably know that we’ve been renting a converted garage from friends since we lost our house. It’s not a great situation, we don’t have kitchen or bathing facilities down here (we have to go up to the main house to cook or bathe;) and it’s small, cramped, and dark. On the other hand; it’s close enough to my part-time job that I can walk to work, our roommates/landlords have been really awesome about letting us pay late if our checks aren’t enough to cover the rent that week and letting us borrow their car to get hubby back and forth to work, and it’s close to public transportation.
Financially, it’s been a real strain though . . . the job situation in the city is really bad, so there’s a lot of competition. For people like us; older (I’m over 50,) with spotty work records due to illnesses, etc.; there aren’t many options except part-time, low-wage retail work that doesn’t pay enough to live on; and even those jobs are almost impossible to find.
Hubby works for a retail crafts store that gives him an average of 11 hours a week. (In other words, he makes $50 to $75 a week, and it took 6 months to find THAT job.) This confuses me – why hire 6 people to split hours between when you could hire 3, give them 20 to 25 hours a week, and they MIGHT actually be able to eat? They’d still be part-time, so you still get he benefits of hiring part-time workers instead of full time ones, but your employees have a better chance at a semi-decent life and the turnover isn’t as high.
My job is a little better, since I average 25 to 30 hours a week, and I’ve been there 2 years so I’ve gone from minimum wage to $8.50 an hour. The problem is, it’s very physical so it keeps my pain levels higher than they are on days I don’t work; and it’s customer service, which is very stressful and also triggers my fibromyalgia. Even worse; we barely manage to cover rent, food and a few OTC remedies for my physical issues; so the financial stresses are HUGE; and because there’s no money to pay anything on debts from before I lost my $60,000 a year job, I’ve been garnished. Even if I was physically able to work more hours, it would make absolutely no difference to my income because every penny I make over $186 a week is taken away. (That does NOT mean I can count on $186 a week though. If I’m sick or hurt and have to call out, I don’t get paid; and there’s at least one week a month that I only get 16 to 20 hours, which works out to a take home pay of $75 to $150.)
So where does the starting over come into all of this? That’s complicated . . . Continue reading Starting Over is a B**ch »
By wendy, on February 29th, 2012%
By Wendy Burnett
Have you lost friends because of your chronic physical or mental illness? I have. Actually, I’ve lost quite a few friends since I got sick, for a lot of different reasons, but the only ones I really regret are the ones I’ve lost to chronic illness burnout. Those, I could have prevented, if I’d known back then what I know now.
 Chronic Disease (Photo credit: tamahaji) I used to have a very small group of friends that I talked to, and everyone else got the “everything’s fine” act. There’s not anything wrong with giving people the act, if they’re only acquaintances or coworkers, and they don’t NEED to know what’s going on with you, the problem actually comes in with the people you really talk to. We all need someone to talk to when we’re having a high pain day, or the depression is so bad that all we want to do is curl up and die, but loading it all on just a few close friends can be a bad thing for them and for you.
Whether you have a physical illness, a mental illness, or some combination; if you only share your pain and negative feelings with a few people, there’s a danger that it will be too much for them. Overloading your support network can cause them to have to pull back so that they can take care of themselves, especially if that is all you ever talk to them about. This is not selfishness on their part, it’s self protection. You HAVE to deal with your chronic illness every day, but your friends can get burned out if you lean on them too heavily. (We can get burned out ourselves, too, but it belongs to us, and it’s a lot harder to step back from when it’s yours.)
Don’t freak out!
I’m not saying you can’t tell your friends how you feel, or that you’re having a hard time. What I AM saying is don’t depend only on one or two close friends for all of your emotional support. Everyone has their own crap to deal with, and sometimes they can’t deal with your stuff too; Continue reading How to Avoid Burning Out Your Support Network »
By wendy, on February 2nd, 2012%
By Wendy Burnett
I hate the “court shows” that have taken over daytime TV, but I get stuck watching them on a regular basis because my husband likes them . . .
That disclaimer being made, Judge Judy happened to be on my TV the other day while I was getting ready for work. The case doesn’t really matter, it was just another group of folks making themselves look stupid until Judge Judy came out with something to the effect of:
“if he was able to go pick up money at Western Union, twice, he doesn’t sound very disabled to me!”
This is a perfect example of the total ignorance of what a disability IS, and the complete lack of understanding that people with disabilities face every day from the “healthy” population.
Does Judge Judy perhaps think that if we are not totally confined to our homes, we don’t qualify as disabled? Has she forgotten that even those among us who use a wheelchair, and therefore are VISIBLY dealing with some form of disability, are still able to leave our homes? Continue reading Judge Judy and (the Lack of) Disability Awareness »
By wendy, on January 21st, 2012%
By Wendy Burnett
I’ve been seeing some questions online about what a “flare” is, and how you know when you’re having one. The simplest definition is “a time when your fibromyalgia symptoms get worse, then improve again.” (With the caveat that if they STAY worse permanently it’s not a flare, its a worsening of the illness.)
A “fibromyalgia flare” is actually more accurately described as a “symptom flare,” since it can involve ANY symptom or combination of symptoms related to the illness or to comorbid conditions. Most patients (and doctors) only look at pain and fatigue levels; but increased severity of IBS/other digestive issues, fibrofog, anxiety, depression, itching, skin sensitivity, or any other symptom related to your fibromyalgia is ALSO a flare.
Each patient tends to have their own specific definition, so if you ask 20 people, you’ll actually get 20 different definitions; but they’ll all have some things in common: Continue reading What is a Fibromyalgia “Flare”? »
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